Down syndrome mothers’ group offers much-needed friendship, support

I’ve never been a joiner. In college, I held a poor person’s disdain for sororities. I never belonged to a PTA of the schools my five children attended, though I donated. And when, like me, my only child in marching band played in the percussion section, I attended most of his performances but told him upfront I’d never be a band parent. (If you know, you know.)  

Then, 12 years ago, I birthed my way into a group. When my last child arrived with Down syndrome, my need to know other mothers of children with DS was immediate, strong and continuous. Shortly after my daughter Lyra’s birth, two other mothers with children Lyra’s age started the non-profit Down Syndrome Diagnosis Network (dsdiagnosisnetwork.org).

The mission of DSDN is “to connect, support, and provide accurate information to parents – and the medical professionals who serve them – from the time of diagnosis through age 3 while fostering the opportunity for lifelong connections.” DSDN hosts several online groups for parents of children with Down syndrome, and each year a new group is formed for families of children born that year. 

I am a member of the initial group and we refer to ourselves as the “Original Rockin’ Moms,” or “ORMs.” The rockin’ part refers to our kids, whom we feel rock that extra 21st chromosome. Connecting with mothers whose children with Down syndrome are the same age as my own child has been invaluable. Women across the nation immediately respond to questions about whatever issue, concern or celebration another family is experiencing.

The first years of Lyra’s life, I regularly interacted online with my ORMs. We shared countless ways in which we helped our children acquire skills that most typical children pick up with seemingly little effort — things such as nursing, sitting up, crawling, pincer gripping, walking, talking and, perhaps most of all, toilet training.

During Lyra’s first years, I felt chronically panicked about whether I was doing every thing I could, and each thing the best way possible, to help her gain the skills for a full, happy life. Starting weeks after she was born, Lyra received speech, occupational and physical therapies for five years at Akron Children’s Hospital, where she still attends speech therapy sessions. She also receives all three therapies at her elementary school.

I went to my first of many National Down Syndrome Congress conventions shortly before Lyra’s first birthday. There I attended informative sessions on early speech development (and also bought a straw kit that trained her tongue to rest not on her lips, but inside her lower jaw’s horseshoe of teeth), and gross and fine motor skills. It is also where I met many ORMs in person for the first time.

But not all parents of children with DS have other things in common. Like any large group, some members will coalesce more easily with one another than with others. Think of the people you knew at school. You may have liked most of them, but only had sleep overs with a much smaller group. 

A few years ago, a subset of the Original Rocking’ Moms started an annual get-together. I missed the first three because I wasn’t paying attention. Lucky for me, a few of these women reached out this spring and begged/ordered me to join them this year on a cruise. I had never been on a cruise because I presumed, like joining groups, I’d deeply dislike a trip that was overly organized and commercial. Boy, was I wrong.

For four days and three nights last month, 15 of my favorite mamas and I ate incredible meals, enjoyed a wide array of live entertainment, visited the beaches of two Caribbean islands and, best of all, danced for hours every night (silent disco, here I come!). 

At the three previous events in cities, my ORMs endured unending logistics. Which hotel? Where to go to dinner? How many Ubers to call? Who paid for the Ubers and how much does each person owe? Do we want to see a band or a comedian? Those stressors do not exist on a cruise and we determined that from now on our annual gatherings will be cruises at different ports around the country.

We also did not need scheduled discussions about our children. Most of us have known each other for over 10 years and our conversations naturally flowed to the topics now germane to most of us, such as puberty and middle school. I left the ship believing Lyra is doing fine developmentally, which can feel hard to know when few DS families in our home community have children her age.

Parents of children with Down syndrome often say that their child is everything they never knew they wanted. I feel the same about my tribe of Down syndrome mamas. I belong to a lifelong group I find in many ways to be as meaningful and important as family. Sometimes even more so.

This was first published in the Akron Beacon Journal on Sunday, October 13, 2024.